Wednesday, April 02, 2014

The Loss of a Disabled Hero

The loss of a disabled hero

 | April 2, 2014

Hours before Chong Tuck Meng went into surgery, he told this writer that he was looking forward to get back at once to his advocacy work again.
Anthony-SB ThanasayanThe local disabled community lost one of its best known activists last month. Chong Tuck Meng, aged 52 and who hails from Bentong in Pahang, died a fortnight ago in a private hospital in Kuala Lumpur. He underwent a kidney stone surgery that became complicated.

No one knows Chong better than 55-year-old Francis Siva. He also owes a great deal of appreciation to Chong for helping him cope with his life of disability all these years.

“I was in a state of total depression after I became paralysed from my neck down following a motor accident,” recalled Francis from Rawang, Selangor.

“Being a very active businessman before my accident, my handicapped state was just too much for me to bear. I just wanted to die,” he added.

“I refused to cooperate with my doctors or physiotherapists. Even professional counsellors couldn’t get to me. I simply refused to believe that life was worth living again.”

That was almost 30 years ago.

Today, however, Francis is president of the Independent Living and Training Centre Malaysia – a uniquely successful self help disability centre which helps empower Malaysians with disabilities like himself.

The ILTC helps disabled people mostly from poor backgrounds to take charge of their lives with independent living skills and plan out their lives.

“I sometimes shudder at the thought of what would have happened if I had committed suicide way back then during those initial days of confusion,” said Francis.

Which is why he is ever grateful to have met Chong.

Francis first met Chong in 1987 in Hospital Kuala Lumpur. This was about six months after Francis’ accident.

“The doctors intentionally placed my bed next to Chong who was also a tetraplegic like me.
“They told me they were doing this with the hope that by me talking to Chong, it would help me accept my disability and move forward,” Francis explained.

Chong had the experience of becoming handicapped two years earlier which made him paralysed like Francis.

Chong was riding pillion on his best friend’s motorcycle when it suddenly lost control. His friend escaped with only minor scratches whilst Chong bore the brunt of the mishap.

“Although Chong warmly greeted me with a smile, I suddenly found myself coiling up.

“I knew it was a rude thing to do but I couldn’t help myself. I remember feeling that my life was ended and the last thing I wanted to do was to have a ward mate in the exact same condition as I was.”

Wheelchair advocate
002And although Francis never spoke to Chong for nearly two months, the latter didn’t seem to mind it.

“Chong seem to understand that I needed time to get over my depression. He would still be nice to me and make polite talk even though I never replied. And then, things started to slowly change.”
Francis started to observe the positive way in which Chong treated life.

Although he couldn’t move around without the help of others, he never complained. Instead he tried to do things often with the help of nurses and his family members who came to visit him.
These ranged from having his meals, shifting from his bed and to the bathroom and going around in the ward to talk with other patients and the hospital staff.

The biggest impact that Chong made on Francis was when the former got discharged 10 months later.
But Chong never forgot his friends in the ward. He came back to visit, something he would do again and again, just to encourage them.

“When Chong returned, he was no longer in patients’ garb. He was dressed well with normal clothes and spoke with a lot of confidence.

That was the major turning point for me that made me realise that there was life after disability – even for the profoundly paralysed like Chong and me.”

It wasn’t until after Francis was discharged about 4 years later from the government hospital that both he and Chong started working together on projects to help improve the quality of lives of disabled Malaysians.

These included areas of counselling, job employment to advocacy for disabled welfare and rights with the government.

Chong especially excelled in the field of advocacy. He was never afraid to speak his mind whenever it involved the interest of disabled people.

He would boldly express his views in public to ministers, health care experts and to social workers.
Some of the issues he passionately fought for were for special caregivers to look after people like him and the cost to be footed by the government as is being practised by other countries.

Chong also strongly felt that every disabled person in the country should be given RM500 a month as an aid to daily living and rising costs.

Ongoing work
001He pointed out that some of the national budget for the disabled over the recent years were some of the worst he had ever seen by not addressing the real needs of the disabled.

Hours before Chong went into surgery he told this writer that he was looking forward to his week long recuperation prognosis and get back at once to his advocacy work again, among others.

But as fate would have it; his presence was needed more elsewhere – leaving all of us who respected and admired this great champion of a man to carry on with his key work and mission here on earth.

Chong headed wheelchair basketball and rugby in Malaysia. He was a great believer in animal-assisted therapy.

The wheelchair advocate relied on his personal schools of goldfishes in his half dozen aquariums for daily de-stress in facing his challenges each day.

Anthony SB Thanasayan is a wheelchair and animal activist. He is also a former city councillor.

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